The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

A special needs parent is . . .


You wouldn't like me when I'm ANGRY!!!
If you are reading this hoping for assurances that it was all part of God's plan, that He chose you because you're selfless and strong and special, then you are in the wrong place.  Or if you wanted a list of how multi-skilled and multi-talented you are, how you're a nurse, doctor, pharmacist, physiotherapist, occupational therapist and teacher all rolled in to one, then you wont find that here.  If you thought this was going to be a life affirming description of how much better you are than the 'other' parents and their 'typical' kids then you'll be disappointed.  And you clearly don't know me very well! But if you head over to Facebook or scour the Internet, you'll find a multitude of stories, poems and platitudes that'll make you feel better.  You see, it has long since been apparent to me that actually the one characteristic that the majority of special needs parents share isn't compassion or selflessness, kindness or courage, it's anger! Special needs parents are ANGRY!

Just keep calm and smile . . .
In a former life, before the arrival of Little H, I came in to contact with a lot of special needs parents.  Call it fate, call it part of 'The Plan'; training for the life I lead now, call it coincidence or good fortune (perhaps misfortunate might be more appropriate some days) but I learnt a lot of lessons and a lot of skills in those years that have helped me cope with the trials and tribulations Little H, and the army of professionals we come into contact with, throw my way. One major lesson I took away was, to paraphrase a now rather irritatingly overused slogan, 'keep calm and smile'. Be nice. And don't get angry. Don't get angry. Don't get angry. Did you hear me? I said DON'T GET ANGRY!!!

Parents who were home schooling their children because they had been so let down by the education system, parents fighting the Local Education Authority to place their child in a school that might at least attempt to meet their child's needs rather than dumping him in the local mainstream, parents fighting teachers who had neither the time, the resources (or sometimes the inclination) to differentiate the class work yet further so that their child could access the curriculum; I have met them all.  I have seen mothers cry in anger because their child has been discriminated against, fathers crying in frustration because medical incompetence has put their child's life in danger, parents physically shaking at some injustice or other.  I have heard some horrendous stories of children and families being let down repeatedly by the education authority, the health authority and social services.  I have been shocked, surprised and annoyed on their behalf.  But often, part of me thought, if you'd just smiled more and asked nicely then perhaps things wouldn't have got so bad. Maybe you went about it the wrong way. All this shouting and shaking and getting angry isn't going to make people want to help. And I vowed never to be THAT parent, the angry, shouty, shaky one, the one whose voice you can hear buckling under the pressure of trying not to cry.  After all, I was at an advantage- I could see it from the teacher's perspective (having been a teacher) as well as the parent's perspective.  I would be the epitome of niceness and calm!

Happy, happy, joy, joy ...
And Little H came along and life was slightly more complicated than it had been with Cheeky.  But I learnt the names of all the receptionists and I started telephone conversations with 'I'm sorry to trouble you' and 'I wonder if you could help' and I said please and I said thank you and I thanked people for their time, their patience, for going to such trouble.  And it worked. Receptionists squeezed us in for last minute appointments, chased up test results, rang us with cancellations. Being nice worked! I patted myself on the back for being so cunning!

Then H became more complicated (or complex as the doctors LOVE to say) and we needed more appointments and started seeing more and more and more professionals. I snapped and swore at a receptionist who had the audacity to ask if I was sure it was an emergency, while H screamed in the background for the 16th hour in a row, Cheeky sat crying for his lunch and I couldn't remember the last time I'd slept for more than an hour at a time without having to get up to catch projectile vomit, or sit in a steam filled bathroom to ease his breathing or just walk backwards and forwards, listening to endless crying but being able to do nothing to help.  The swearing wasn't my finest moment. It got me an appointment mind you but I did go and shame-facedly apologise to the receptionist.  I had a word with myself after that. I repeated the 'keep calm and be nice' mantra to myself, but I realised it wasn't as easy to stay calm and smile when you've barely slept and spent so much of your time listening to screaming and crying that you'd eventually reached the 'if you can't beat them, join them' point and collapsed in a corner sobbing and rocking.  Yeah, not quite so easy to stay calm and smile then!


Time went on and the list of professionals grew. At last count there's 23.  That's not an exaggeration, I can list them if you want (paediatrician, neurologist, dietician, community nurse, opthalmologist. . .)  And Little H needed more services and equipment (specialist buggy, standing frame, supportive seating system, lycra suit, piedro boots. . . ). That's a lot of phone calls, appointments, letters. That's a lot of professionals, receptionists and opportunities for things to go wrong, or get lost, or get forgotten about, or get sent to the wrong person. That's a lot of 'I wonder if you could help' and 'thank you for your time' through smiling, gritted teeth. 

I try very very hard to remain positive and happy and calm, to remember that H isn't their only patient/ client/ service user/ whatever the politically correct term is these days. There are times though when phone call after phone call and email after email just don't seem to get the job done. Times when the service you receive (if at all) is so far below your expectations that it beggars belief. Times when Little H and I have been so let down that I can feel myself shaking with anger. Times when Little H's health has been put at risk and I could cry in frustration. These are the times when I have to take to the computer and write a 'Letter Of Complaint'. 

Getting a bit of a name for myself!
Yesterday as I finished my most recent letter of complaint (with gems such as 'it is unfathomable to me how after 9 months this issue has not been resolved' and 'It should not take this much effort on my part to organise a simple care package for my son.') and was imaginatively saving it as 'complaint to . . .', when up popped a list of recently written complaint letters. I appear to have become a serial letter-of-complaint writer.  To be fair, I don’t just sit around moaning, waiting for the next thing to complain about – it’s only for the really serious issues that I have made an official complaint, mostly for when some oversight or neglect has put H’s health in danger.  One letter resulted in a complete review of a service and an overhaul in the way it was provided, another ensured rules and regulations that were appropriate for most were adapted for H and who knows what yesterday’s letter will achieve – the head of service is coming to visit us next week to discuss the issues I raised.  It is frustrating though that it takes angry complaint letters to get things done.  I am busy enough with appointments and phone calls and therapies without having to complain to get a basic, acceptable service. 

Little H has just turned two.  So far I have submitted four official complaints about the care he/we have received.  Luckily, I have been able to channel that anger constructively into a good letter of complaint, but each time leaves me exhausted and causes anxiety about the knock-on effects complaining may have on his care and the perception people will have of me.  It is both mentally and emotionally draining.  I feel compelled to write though, partly to feel that I am doing something useful with all that pent up emotion, but also because if someone doesn’t complain, nothing will get changed and at least I am in the fortunate position to be able to raise these concerns in a (relatively) coherent manner.  What about those parents who have difficulties with literacy, who lack confidence or perhaps have learning difficulties themselves or English as a second language?  What happens to them when their care is substandard?  Who advocates for them?

Yesterday, as I challenged the person responsible for the mix up that meant H could still not be left with his carer for a few hours after nine months of organising and planning, I felt myself start to shake.  I tried to keep my voice on an even keel but I could feel it breaking as I explained that their failure to resolve this issue had resulted in H’s older brother Cheeky not being able to go to the soft play area as promised.  Instead, with me, he had to stay and babysit his brother and two carers.  Mix ups and forgotten letters and broken promises and mistakes don’t just affect me – that I could handle perhaps, but they affect Little H and they affect Cheeky.  The whole family suffers as a result.  And that’s not fair.  As I explained this, as calmly as I could, I felt my legs shaking and a burning lump in my throat at the injustice of it all.  And I realised then, that I am becoming THAT parent.  That shaky, shouty, angry parent.  This is what the NHS has turned me into, in just two years. 

And I haven’t even started with the Education system yet.  God help us all!


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Amazingly, there's someone else out there with as warped a sense of humour as me and has voted this post for the 'funniest post' category in the #SWANs!

If you'd also like to nominate this post, you can do so by following this link:

The SWANs Blog Post Awards


Or if you'd like to find out more about the SWANs visit the SWAN UK website: www.undiagnosed.org.uk 



Comments

  1. So glad you shared this Emma. Love the pics too! Don't get me started on the NHS. I've had 28 years of it &, yes, I recognise myself as that angry parent too. A so-called friend even suggested that C's weird self-injurious outbursts were a sub-conscious reflection of my suppressed anger. As I preview this comment, my hands keep clenching & unclenching. I wonder why!?

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  2. You are so right in that it does make you angry, frustrated and annoyed that people dont do what they should do and promise to do. I think it is a brilliant post and is a good point made!

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  3. When Freddie was a few months old & i came across all these poems I thought they were great, but the more & more i read them now the more i dislike them. I was so naive as to how hard it would actually be.
    I thought a bit of equipment & a bit of therapy & we would be sorted...I wish!
    I'm so fed up of everything being a fight. Most of the time i feel like giving up, particularly with Freddies respite. I'm so fed up of being promised things & then being left disappointed, angry & stressed when we don't get them.
    The future now feels me with dread. Our pushchair fight was hard enough to sort & as silly as it sounds left me totally drained from constantly having to chase it up.

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  4. Jane, I laughed in astonishment at your friend's comment. That is unbelievable. I'm assuming you see very little of each other now. 28 years of it, phew! I'm not sure I'd have the energy to keep fighting. I'm exhausted after two years!

    Thanks Sleepless in Newcastle. We're all ticking timebombs of rage I think! :D

    I thought of you and the pushchair fight as I wrote this SwanFreddie. One incompetent fool after another making mistake after mistake. You're right about the additional stress it cause - I don't think I even referred to that - it's a wonder we are not all falling apart at the seams with all the hoops we end up jumping through! (OK, some days I am). The sad thing is, that there are so many many aspects of H's care that are fantastic - his CCN, his paediatrician and I try to focus on that but it is so hard when there are so many fights to be had too. I understand about you feeling stressed about the future. You'll get there though and we'll all be there helping you through xxx (and if you need any complaint letters writing, I'm you woman!)

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  5. Knowing myself quite well... I tried to be nice person at the beginning too... But as the crazy thing after crazy thing happened along the way... Unfortunately (or fortunately) I realised that 'patience is NO longer virtue... And no matter what the people who never walked in my shoes tell me - only demanding what Patrik is in titled of, get me somewhere... Sadly, no 'please' and 'if you could help me' get me anything... Sadly but true... And I hate being the person who must nagg all the time...

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  6. I have discovered that being nice gets you nowhere. Certainly be nice when its warranted but if people are not pulling their weight for the good of your child, I'd say Angry is a pretty useful tool!

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  7. I used to be nice and trusting but it never got me anywhere either. My children were ignored and we headed into further complications with my son and then daughter. I learnt through that that I had to try and be both charming and assertive. It wasn't easy when all I wanted to do was either shout, scream or cry. But I tried to work with those who had the power to improve our lives but to also not be afraid to complain when I had to. Don't always get it right though; sometimes I'm just too tired. Deb

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  8. I would like my mantra to be 'Keep Calm and F**k Platitudes'. What a brilliant post x

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  9. I'm going to go against the norm here. I was that parents, and then came out the other side. I would have burnt out, I was losing my mind. Now I pick my battles. I get angry, hell I get angry, but I focus it into research marathons, bone up so I am the expert in whatever area I'm fighting, and then I fight smart. I find being angry less useful than being right, and being able to prove it :-)

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  10. Brilliantly written post, one which I'm sure summarises the feelings of a lot of 'us' special needs parents. Anger burns you out do quickly though, and you need to keep your wits about you in this game! Easier said than done, I know. Hugs to you all x

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  11. I love this post. But I want it read by lots of parents who DON'T have a child with special needs. They need to know.

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  12. Petra, JontyBabe & Deb - it's a shame that we are all finding that 'nice' doesn't always work.

    Areyoukiddingney - think you should get a poster made!!! :D

    Renata - you would, ha ha! No, being right is VERY satisfying, though sometimes it is horrible, when being right means that something is wrong - if you know what I mean? I did think about your Zulu principle and the amount of research you put into Dominic's nutrition!

    Stpeh - you're right, it is exhausting and we do have to be careful not to burn out. Like Renata said, I suppose we have to pick the battles.

    Thanks Blue Sky - I notice you have been making sure that happens with your tweets. Thank you! :D

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  13. Anyone want evidence of Renata's 'research marathons' and how to fight a good battle, read this: The Zulu principle: http://www.justbringthechocolate.com/blog/zulu-principle/

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  14. This post should be published, so many of us would identify. I honestly belive posts like this should make it in to the media.

    Keep up the fantastic writing.

    Very Best Wishes,

    Jo xxx

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  15. Just a huge thank you for allowing me to use this post on my Special Needs page. It's attracted a lot of attention, all very positive.

    CJ x

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  16. This is so true. I have been nice with primary school and they've cocked up a couple of things. I will try to be nice with High school, but we do learn by experience and we don't have the time or the emotional resources to give every different person the benefit of the doubt. You have to keep pushing. Nice to find your blog btw.

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  17. Jo - thank you, that's very kid!

    Crystal Jigsaw - No, thank YOU for using it on your page - I feel honoured that you have - and for sending a few new followers my way. Much appreciated. xxx

    Violet'sDiary - Thanks for popping by, reading & commenting Violet. You are right - it is very hard to invest such emotional energy into every single person you meet. I hope that High school isn't too difficult an experience and your inner 'hulk' doesn't need to make an appearance!

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  18. What an absolutely brilliant blog!

    I used to nice but it got me nowhere. Nowadays I never accept a 'no' from someone who does not have the power to give me a 'yes'. :)

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  19. Exactly. It doesn't always pay to be nice does it?
    Thanks for stopping by.xxx

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  20. I read this blog last year and was such a nerd at navigating my way around blogs that I ended up accidentally listing myself as 'anonymous' (I used to be nice?)

    I laughed again when I read it this evening and remembered I'd loved it so much I thought about asking you if I could put it at the end of my book but on second thoughts it would be a fantastic opening for when you write yours.

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  21. It'll be awhile before I'll ever find the time to write a book Michelle, ha ha. Thanks though and you're welcome to use it if you want to. Thanks for popping back to reread it xxx

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  22. We are delighted to let you know that this post has been nominated in the 'Funniest' post category of the SWAN UK Blog Post Awards (aka The 'SWANS')

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you - make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

    www.undiagnosed.org.uk

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  23. Eek! Thanks Lauren, that's very exciting! Thanks for letting me know xxx

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  24. We are delighted to let you know that this post has been nominated in the ‘Most Inspirational’ post category of the SWAN UK Blog Post Awards (aka The ‘SWANS’)

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

    http://www.undiagnosed.org.uk

    ReplyDelete

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